WALKING HER HOME

Adrift. That’s the word that floated into my teary vision as I sat in my car outside the facility my mother has resided in for the past seven years. These after-visit pauses have become part of my ritual in the past few months.

There is always someplace else I need to be, fitting in my mother’s care and comfort as I do between the over-arching needs of my autistic daughter and the other pieces of my life’s work. I just can’t seem to rush off the way I used to, though. I need these little islands of time and quiet to process the latest iterations of mum’s decline. The downhill roll has picked up speed, it seems, as she moves ever closer to the time she’ll leave her body.

My mother and I have talked about dying, death, and the afterwards for decades, beginning when I was a teenager. Sometimes in snippets, sometimes in long, deep conversations, we’d discuss some new perspective one of us had gained through a book, a life shift, or our individual growth. We share more than a few overlapping beliefs about the life of the soul. It’s a sturdy connection between us, a deep comfort during this time where so much is tenuous.

Mum’s body is weakening. At 93, cancer and several peripheral conditions seem to be simultaneously consuming her from within. Her cognition is variable, too—sometimes sharp and clear, her signature intelligence and humor intact and vibrant. Other times—more frequently by the week now,—she is confused, delusional. The combined body-mind decline makes it exponentially harder for her to complete simple tasks like getting dressed and staying hydrated. She chafes against what is happening, has told many in her web of family and friends that she’s lived long enough, has no intention of reaching her 94th birthday. At least once a week, we’ll have some iteration of this verbal volley:

Mum: This isn’t the way I planned for things to go.

Me: I know, but we don’t get to choose.

Mum: Yeah, but this is taking too long.

At which point one or both of us will manage a wry sigh.

Mum has been traveling a great deal lately. She’ll relay her trips to me and my siblings when we call or visit.

I’m exhausted. I was in England last night.

Oh? Where in England?

At the palace.

or

I was up in Maine with so-and-so. I had to sleep on the uncomfortable bed in the cabin. We couldn’t get back here until today. I am sooo tired.

Several times, she’s been upset, almost frantic, wondering where we (her four children) all are and what she is going to cook for our supper. There has also been frequent mention of a baby that she needs to take care of. She isn’t sure whose baby it is, only that the child is in her charge.

My late father has shown up a few times, too. Though they were divorced in 1976, his appearances seem benign, even welcome.

She will often be at least partially aware that she is describing an illusion, but each feels very real to her. I think she is straddling different dimensions, moving almost fluidly between them. I’ve said as much, and if the cloud cover in her brain is minimal that day, she’ll agree, or say maybe, but it’s not fun.

These past ten months or so have been all colors of challenging, fascinating, sad, beautiful, and draining. I’ve been aching to get some of it down on paper. Time, and concern for her privacy, have kept me from trying. A few weeks ago, though, when she was quite lucid, I told her that I want to write about it. I don’t want to be disrespectful, I said. I don’t want to intrude on your inner life or claim it. I just want to write about my experience of it, of moving through this with you. Her answer astonished me. How can it be disrespectful? she said. It’s what is happening.

Recently, she misplaced her lower dentures. Logic led me to look behind her bed, which is where I found them. She was amazed at this, and exclaimed that it must be my fairies that told me where to look. (I do often ask the angels for help when something is missing, and while I didn’t call on them that particular day, she remembered this.)

Mum: What do your fairies say today?

Me: They say ……. they say it is a honor and a privilege to help walk someone home.

And so it is. Only those that predecease their parents avoid this bittersweet reckoning, these fraught goodbyes that will render us orphans. It is gut-wrenching, but if that’s my experience I know my dear mother is living it one hundredfold stronger. I’m grateful to be there to help ease her way. When I’m wrung out and not sure how I can keep rising to the dual caregiving of daughter and mother, the fairies will be there to remind me— it is a honor and a privilege to help walk someone home.

What Do You Know?

What do we know for sure? I find myself wondering, lately, if we mostly hold the beliefs that suit our ease.

For some, self-contempt can provide a kind of familiarity which becomes belief. For others, there is ease in what’s left after all the anger—which is really a mutation of pain—gets bored and leaves, or burns away. Some find their peace in caring for others. Some may see truth in the days that offer little resistance to their status quo. Most of us may host a little of each of these.

Here’s a piece of what I know.

The dresser in my bedroom chafes at being called mine, or ours. It doesn’t relate to our words bureau, chest of drawers, or, for that matter, dresser. It prefers to be called proprietor. For this I hold deep respect, just as this proprietor holds my property.

I suspect the clothing and jewelry held therein does not necessarily enjoy being called those words we use for them. I’ve no way of knowing this, for I don’t have a conversational relationship with them. Well, except for the pyramid pendant that belonged to my mother.

Everything is sentient, but everything doesn’t always choose to be perceived that way. That is my experience, and therefore it is fact in my world. I feel no urge to lay that belief on you, though.

My daughter’s ways of being defy most norms. Manners are a great challenge for her. If anxiety and compulsion press her towards your nose, looking for the relief that a single light touch seems to bring, your negative reaction can send her spiraling into a small terror. She will remember you and that moment forever. Years from now she may be able to recite the day and date that you recoiled from her attempted touch. She will be repeating any comments you made, in a pretty good approximation of your volume and tone, into her tape recorder and into the air. She will scrawl about this in many a scribbly journal. She will not like you. Progress means she didn’t vomit when you said NO.

My daughter, a grown woman by any age standard, remains delightfully child-like in the ways she reacts to the world around her. She knows the colors of every song you could play for her. She struggles to understand that you don’t have such a skill. She sings when the urge strikes her, audience or no.

In the past few years, she is increasingly able to relate the experiences of her past. This can be…

Quite wonderful;
On 4/7/16 you started having gooey oyster. (Her words for my soft hair).

Enlightening:
The reason I cried on the bagnadahl grass girl Teletubby Wednesday is because the rice had cold texture. (No, I can’t tell you exactly what this means, but she clearly did not like the rice on that day!)

Horrifying:
“Mommy XYZ dragged me and pushed me and screamed at me.” XYZ was a teacher she had when she was under 10 years old.
“Mommy why XYZ said I hate you?” Daughter does not know how to lie, so I have no doubt this happened to her. “I didn’t have the words to tell you back then.” These particular deeply upsetting revelations led to my first two dozen attempts to introduce the word *abuse* into the teaching moments about how others should treat us.

I do not question what my daughter knows for sure, just as I wouldn’t second guess your right to name your own knowing. You don’t need to hear the proprietor speak in order to believe that I do. It’s the free sharing of our individual lived experiences—which includes deep listening—the alchemy of honesty and curiosity and respect, that seems to prod the important conversations. Rich fodder for growth.

–Melinda Coppola

Conversations with a Ghost

A Dead Friend Speaks

Almost a year
into my exit from flesh,
what we call,
when embodied,
death,

You talk to me,
wonder if I help
when you struggle and worry,
soothe
when you rage and grieve.

You ask
if I’ve retained shape
and color,
if my long and wild hair,
blonde with streaks of fine silver,
still tumbles down my back,
if I jog and cycle daily
in some shimmery,
cancer-free realm.

Am I still an I,
you query

or has my essence
mixed and mingled
with all the others
wafting in great waves
of something like wind
around and through
cosmic caves
and mountains
glowing in a light
your human brain
can only begin to imagine.

I will neither
confirm nor deny,
sister of my soul.

These
are not your questions,
you
do not
seek answers.

You have always known,
were the one
to reassure me
as my flesh wasted
and my fears grew.

Look for dragonflies,
I said,
and a couple dozen
appeared
in odd places
after I left.

My disembodied
face floats in corners,
signature hair swirling
as if I just dipped
my head
beneath my new surface,
peering through the murky waters
checking in on you.
Sometimes you look up,
acknowledge me,
smile.

Why, then,
do you question?

I am not an I,
but I am as me
as any of us ever are,
just as you
were alive before incarnation,
and will live on
after you discard your body.

Trust is a thick cloak
woven tight with
threads of wisdom
and surrender.

It will always
keep you warm,
as long as you remember
to put it on.

–Melinda Coppola, remembering Marina Powdermaker, who was born 8/27/61 and left her body 6/28/20. We do speak often, she and I.

Look up! The world is out there.

Reckoning

Inside,
just shy of sunrise,
all over the land
people awakened,
reached for their small screens,
hungry for the tiny words and pictures,
memes and videos designed
to amuse, entrance,
distract from stress
and angst of bad news
streaming 24/7.

The people found ways to laugh,
or groan, and see themselves
in the scowls and smiles
highlighted in the glowing rectangles
carried lovingly in their hands
on the way to coffee, couch,
another screen or two
or three.

Outside
the skies
performed their daily
variety show,
clouds merging and shifting,
watercolor hues melting into each other.
and great glories of birds
synced their choruses
in time with ascending light.

Stories floated on the early breezes,
timeless wisdoms woven into the mosaics
of bark and leaf and urgent bud,
fed by roots
deeper and broader
than any iteration
of wide screen
mounted
over any fireplace
in any dwelling.

Grass held dew
like an offering.
Silence hovered uncertainly
between chirp and trill,
wind and caw,
waiting to see
who would welcome
the peace, calm and beauty
surrounding them.

Inside,
bonded pairs would grunt in passing—
partners, parents,
children, roomies—
conversations eclipsed by texts
as if seeing and speaking
to one another
were relics
that everyone knew
just stole energy
from the flashier screens
telling them how to think and feel,
act and buy.

Outside and unattended—
solace of cool air,
magic lavender light,
sweet-smelling rains,

the nourishing feel
of earth under bare feet,
dirt beneath fingernails,
crunch of old pine needles
under kneeling knees
in the forest—

a glorious bounty
always free and waiting
beyond our screens.

–Melinda Coppola

Categorically Speaking

Dubbed

One name
for a collection of can’ts,
of never wills and less-thans,
a singular bucket
into which they dump
the myriad ways
she comes up short.

Autism.

The rusty scuttle
whose name expands
to encompass
the collected others—
Obsessive Compulsive Disorder
Severe anxiety disorder.
Chronic polyuria.
Lordosis, Kyphosis.
Intellectual Disability.

Oh, I’ve made peace
with all the labels,
pocketed them, even,
as keys to the kingdom
of Getting Services.

It’s just behind
that big familiar bucket
the real of our story is told,

told and retold
at home, in the car,
on our daily walks,
when I sing her awake,
the telling and retelling
woven into all our routines.

Her future is unknown.
Worry for her safety
looms large,
and for that alone,
this wish to stay alive
as long as she,
well past my allotted time.

Yet
sure as sunrise,
deep as canyon,
boundless as evening sky
lives certitude—
my daughter knows

her names:
Love.
Loved.
Beloved.
She Who Hears Colors in Songs.

And her other names,
also true,
which she may or may not
recognize—

Patience Coach.
Systemizer Extraordinaire.
Incognizant Teacher
of the Core Curriculum
of the Heart.

–Melinda Coppola

For some who left

STAY

I want to dematerialize
and put myself back together
between his reedy young body
and the gun he stole
from his Uncle’s desk drawer
the night they
invited him for dinner.

I want to land hard
between her hands—
the same hands that
had just held
an acceptance letter
for the DC job of her dreams—
and the noose
she’d fashioned in secret
six months ago.

I want to hitchhike
way back to 1981 Vermont,
grab all those who knew him,
and beam us, every one,
to the edge of that Hawaii
volcano where they said
he’d jumped,
so we could form a human barricade
between his anguish
and that black hole.

I want to sing,
yell, cajole, say

It will get better.
It can,
I promise you

The world’s gonna need
you next week, next year,
you’re gonna leave a hole
that can’t be filled

and somewhere there is
someone who will
love you so much
you’ll be wrecked to think
you could ever have left
before you crossed paths

and someday
there’ll be a moment—
a car, a bike,
a wet road
distracted driver—
a child whose life
you will save

whose children
will cure cancer.

Please,
I want to say
don’t go.
Not yet.

Please,
let’s sit
and warm the ground
awhile.

–Melinda Coppola
#nationalpoetrymonth

Accepting Autism

Ten years ago, April was designated Autism Awareness month. April 2 is World Autism Awareness day. There has been a movement towards renaming both of these, replacing awareness with acceptance .

Robert Frost wrote,” Always fall in love with what you’re asked to accept. Take what is given, and make it over your way. My aim in life has always been to hold my own with whatever’s going. Not against: with.”

I don’t know many people who fight against the reality of autism. On the contrary, I know dozens of folks who have grasped their circumstances with both hands and shaped them into something meaningful, useful and beautiful. Affected individuals have found ways to educate non-autistic folk and improve the lives of others on the spectrum. Parents of children with the diagnosis have created organizations to assist with creative housing solutions, adapt recreational activities, and push legislation to protect our vulnerable loved ones from abuse and neglect.

I wrote the below poem four years ago. Today seems an appropriate time to share it once again.

Autism Awareness month is April,
World Autism Awareness Day, April 2
and, in case the day lacks color,
(as if any day with Autism in it could be dull),
the mysterious Namers-of-Days-and-months
have painted it a medium sort of blue.
I wonder who decided this;
and how it was chosen,
this perfectly ordinary second day,
and weighted with a long middle
moniker, like a fish
plucked out of the ocean,
tagged and thrown back
into what used to be
a perfectly ordinary fourth month.
And why a color? Why this one?
Does Autism look like blue
to outsiders?
Pondering this, I roll up my sleeves,
prep the tub for her,
the one who turned my life on its ear,
she who makes me laugh,
she who wears me out,
she who is a master of repetition,
she who defies reduction,
who is multi-colored, many-hued.
She who is unaware of your awareness,
who, if asked, would mutter “ Not interesting”,
she who needs help with a bath
but can take a thing
and spell it backwards,
report to the air/no one in particular
how many redundant vowels it contains,
and how her lunch reminds her
of Home on the Range.
She who hears songs in color,
who does not stay in her bed all night,
who is frightened of beads with holes,
she who knows if there’s a day to be aware of
it’s the fourth Friday in February,
which is called Ate Baby Kate, and that means bad,
and therefore must be worried about
many months in advance,
she who can sing whole CDs in order,
she who tells me thirty times a day
that I’m a girl ( in case I forget)
She who needs more than I have
who gives more than I need
who has more than you think,
who is more, so much more,
than you give her credit for.
And so, dear you-who-aren’t-aware,
please allow me to set the record straight.
Autism is multi-colored,
and awareness is every single day,
and no blue second day of any fourth month
will ever matter more
than your interest, your kindness, your respect,
your willingness to help us challenge
a world that would reduce anyone
to an assumption
or a label
in one color
on one day
within one month.

–Melinda Coppola

Little Altars Everywhere


My home is host
to little altars everywhere

honoring lives lived,
seasons arriving and leaving,

the hundred sparks of grace
and wonder, sorrow
and understanding

that pock and foliate
hours and years squeezed
into the dance of this body,

my particular, grand,
unbearably blessed
and gratefully transient
human experience.

On good days
I go bowing through the hours
stretched wide,
humbled by everything.

There are others, though—
minutes, whole
starless nights, mute weeks—
when these dry hands go numb
holding thin skin
tight to my bones

to keep the hope
from draining out
the holes
all the leaving
has left.

–Melinda Coppola

Notes from a Parallel Universe

I’ve written a fair amount about life with my adult child. As I plod ever so slowly towards creating a book about the journey, it occurs to me that the pace at which I’m working on that is in sync with the overall pace and rhythm of our life together. Bink will turn 28 this weekend. I’m not one to fixate on the differences between her development and that of a “typical” young adult, but the anniversary of her birth seems to stir things up for me. From that churn this poem arose.

The View from Here

You say
you just caught glimpses
of your child
as he sped past toddlerhood,
towards those labels
that mean everything
and nothing: child, tween,
teen, young adult.

Glimpses, you say,
as if it all tornadoed past you
while I stood stupefied,
hands in pockets,
by the side of some dusty cow path,
a perpetual look of dull
surprise on my unremarkable face.

Truth is,
over here our lives
are nothing like that.

We have plodded along
like turtles in the too-hot sun,
she and I,

pausing every few feet
to rest, to allow her
a few attempts at integrating
the latest sensory assault,

which could have been a wind
shaking the branches too fast,
or the distant sound
of a jake brake on a downhill semi
from a highway half a mile away.

Her needs are special,
which means our shimmy
is your slow dance,
our milestones
seem like simple addition
to your kid’s calculus.

I’m used to it,
adept at appreciating
the kinds of beauty
that decorate this life
that chose me, and her.

It’s not the pace of it all
that leaves me sweaty
and gasping for breath.

It’s my head spinning
as your children date
and learn to drive,
go to college,
get married,
have babies,
buy a house,

flying so far from your nest
you can’t squint enough
to make out the tiny dot
their bodies make
as they soar onward,
commanding the skies.

–Melinda Coppola

Me and My Shadow Go to Market

It is May 2020,
still early in
The Covid Times.

We take ourselves to the market,
by which I mean
our whole selves,
me in my layers of
self-consciousness—
the run of the mill kind
that most of us don
without thought—

she baring all, as usual:
no pretense, nothing to hide.

The market rule
in the time of virus:
No touching anything, honey,
except yourself or Mom.

We’ve gotten good at this one,
practicing since mid-March,
and so we go,
in service to our shopping list,
following the one way arrows
like breadcrumbs,

and her singing beams
a Disney-flavored sunshine
up and down the aisles
even through her mask.

She pauses in front of the dairy section,
(which means I pause, too)
halts her sunbeaming mid-song,
and announces to the floor,
” Mommy it looks like I have to pee.”

No beats to skip,
for we are well prepared,
the purple handled pee jug
bagged and ready
in the backpack,

nestling up against
the toilet paper,
flanked by two packs
of antiseptic wipes,

and into the bathroom we go,
my shoulder managing doors,
finding a stall, hooking
pack to hang,

pulling out
that magnificent portable
receiver of pee
that makes all outings
seem possible,
conquerable.

We navigate this
like so many other things,
my thought out plan
for safety and practicality

backlit by the simplicity
of her needs,
which aren’t so much special
as they are honest,

the whole thing shined up
by my gratitude, in recent years,
that she can name the feelings,
usually in time to stay dry.

We are each engaged
in familiar activities:
she is peeing
and I am musing,

wondering
and marveling
at what the world could be
if we were all more like her:

free of innuendo,
honest to a fault,
unable to fathom
marching to any beat
but our own.

–Melinda Coppola